I'm So Confused

[JerryK]

So, I'm feeling pretty confused and frustrated. I've identified a potential problem. I've mailed off my poop to some dude in Texas. He's mailed me back and said "You should never eat gluten again".

How do I KNOW this is real. How do I MAKE it real. I mean, on the surface it sounds pretty harsh.

You should never eat bread, the staff of life, again. What a harsh harsh sentence.

On the other hand, I don't wish to damage my body or have symptoms, if gluten is indeed what's causing them.

How about friends and family. Do you all know how silly it sounds to most people, when you tell them you can't eat wheat? I cautiously broached the subject of Celiac/Gluten Intolerance with my mother,

and she looked at me like I was from another planet.

How about my HMO? Do I mention it to them? They already think I'm a sickafantic headcase(but then that is the standard MO, is it not). WTF do I do?

I've been really good. I've done 10 days....to the very best of my ability. Last night my family ate chili and I couldn't have any of it. CHILI for God's sake! I wanted some. I ended up eating mashed potatos and a piece of beef. I just dunno if I can do this for the rest of my life....

Is there a Celiac mental health forum....

[Viola 1]

Has your own doctor done a Celiac panel on you? If you want to get further testing, so should be eating gluten right up to the testing time.

And yes, you should give the information to your doctor, he or she may not have thought about Celiac disease as being the root of your problems.

Good luck with this!

[Electra]

So, I'm feeling pretty confused and frustrated. I've identified a potential problem. I've mailed off my poop to some dude in Texas. He's mailed me back and said "You should never eat gluten again".

How do I KNOW this is real. How do I MAKE it real. I mean, on the surface it sounds pretty harsh.

You should never eat bread, the staff of life, again. What a harsh harsh sentence.

On the other hand, I don't wish to damage my body or have symptoms, if gluten is indeed what's causing them.

How about friends and family. Do you all know how silly it sounds to most people, when you tell them you can't eat wheat? I cautiously broached the subject of Celiac/Gluten Intolerance with my mother,

and she looked at me like I was from another planet.

How about my HMO? Do I mention it to them? They already think I'm a sickafantic headcase(but then that is the standard MO, is it not). WTF do I do?

I've been really good. I've done 10 days....to the very best of my ability. Last night my family ate chili and I couldn't have any of it. CHILI for God's sake! I wanted some. I ended up eating mashed potatos and a piece of beef. I just dunno if I can do this for the rest of my life....

Is there a Celiac mental health forum....

Yah I'm right there with you on the Celiac Mental health board LOL!! What I did is get a positive blood test from my dr, and they too were thinking I was just a chronic complainer, but now I get the satisfaction of smiling at them and rubbing my diagnosis in their faces hehe!! It's not fun to have but what a relief when you find out that all that you have been going through is a medical condition and not your fault. On one hand I'm overwhelmed by all that I have to change and what I still have to learn and by how hard this is going to be, but on the other hand I know I can feel better again and I was near death so that's a huge deal to me ;-)!!

I'm feeling so much better already, but my concern is that most studies need a positive biopsy and I don't want one because I have positive blood results and chose to go off gluten so I think the biopsy is not needed. Good Luck in whatever you decide!!

[Fiddle-Faddle]

This IS the celiac mental health forum!!!

Seriously, what was in the chili? I never put wheat in my chili even before I went gluten-free.

Also--YOU MAY EAT BREAD. It just can't contain wheat, rye, barley, or oats.

Please please PLEASE get yourself a french loaf pan and a copy of Annalise Roberts' Gluten-Free Baking Classics. She has a recipe for something she calls submarine sandwich bread which tastes like the best ciabatta bread I've ever had! She uses a mix of millet flour, cornstarch, potato starch, tapioca starch, and sorghum flour, and it is FANTASTIC.

Only the millet flour is expensive--you'll probably have to get it at a health food store or order it on line. The rest you can find cheaply at an Asian grocery store.

Learn how to make this bread, and your gluten-eating friends wil be BEGGING you to bring this to their dinner parties. It's that good.

I would not mention anything to your HMO. They will only use it as an excuse to raise your rates or deny you coverage.

Does it sound silly to hear that someone is deathly allergic to peanuts or shellfish? No, of course not. And this is similar. You can even call it a "wheat allergy" to the more-easily-confused of your friends and family, although, technically, it is not an allergy, as you know. It's an autoimmune disorder--just like diabetes or thyroid disease.

It can be frustrating--but it doesn't have to be.

[Rusla]

My dear, this is not a silly disease and do NOT care what people think. Your life depends (literally) on you not eating wheat and wheat glutens. Let me tell you a story.

My sister was the one who scared me into leaning on the doctors big time to have the tests done. One of her friends at that time has to wander about for the rest of his life with a colostomy bag due to stomach and bowel cancer because of this disease. He is only 43 years old. Her other friend is barely alive in the hospital because they discovered he had bowel and kidney cancer late last year, he was diagnosed with Celiac 2 years ago and he still did cheat because the only symptom he ever had was it felt like he threw his back out. Well now he is fighting for his life because his kidneys have shut down, his intestines had to be removed and he has an infection in his bowels because of all of this and the infections he got when he had the cancer operations. His system was too weak to fight the infections off because of this terrible disease. If he survives, which we don't know yet if he will, he too will have a colostomy bag for the rest of his life.

Do not destroy your life for other people. They are not the one who will suffer the consequences, you will. So you have to make the decision on whether you want to take the chance of people not understanding and thinking it silly or your life.

Do what most of us do and tell them it is a very severe wheat allergy that could kill you.

[JerryK]

See, even on this thread we have someone who thinks I should be eating gluten and trying to get

a Celiac panel from my doctor. Then another who thinks I shouldn't say anything to my HMO. Other folks will tell me to go

with my Enterolab results, because Dr. Fine is the man.... Oh the controversy!

Then there is Fiddle Faddle who thinks my family has time to make homemade Chili Nah, it was Chili out of a can and I was disappointed when I read the label. I WANTED to have some, really badly. Knowing that I wasn't supposed to, made it worse.

Working full time, there's no way I'm going to make bread, let alone gluten-free bread. The best I could do would be perhaps purchase some, if I could find it.

Meanwhile my mental health is deteriorating....

I have corresponded with Enterolab and they recommend a trial period of the gluten-free diet to seem if my symptoms improve. To their credit they are very responsive to your questions. I will stick to that commitment as long as my mental health holds out...

[Phyllis28]

I have been telling people I can't eat wheat, oats , rye, or barley for the last 28 years. I explain that it will make me very sick. Most of the time people think it is an allergy and that's ok. The only people who end up with the explanation of celiac and gluten are friends, family and co-workers. By trail and error I have found this to work the best.

[Viola 1]

Sorry ... I suggested you go to your doctor with it because I am a Canadian and we don't worry about our insurance going up when we have a cronic problem. Things are so different from country to country even though we are connected by an un-fenced border.

What you need to do is what is best for you, but if it is Celiac, or gluten intollorance, you need to stay on the diet to prevent many more problems.

It takes awhile, but the family will learn, having said that, it's your health and your responsibility to look after it.

[Fiddle-Faddle]

Then there is Fiddle Faddle who thinks my family has time to make homemade Chili

Aw, come on, Jerry--I'm a working mom of 3. if I can make chili from scratch, so can you!

Brown the meat the night before, mix all the ingredients together (I'll post a recipe if you need one) in the crockpot and put it int the fridge. In the morning, plug in your crockpot, turn it on "high," and dinner will be ready when you come home.

[Rusla]

I reserve my allergy definition for restaurants and people I don't have time to tell a long story to. Also to the ones who I know are not genuinely interested but that really have to know I will sit and explain the disease to them. The rest know what it is by definition but can't get their head around it.

However, to start with saying it is an allergy is good till you can get them into the right mode.

[JerryK]

Sorry ... I suggested you go to your doctor with it because I am a Canadian and we don't worry about our insurance going up when we have a cronic problem. Things are so different from country to country even though we are connected by an un-fenced border.

Certainly no apology necessary. The sad truth in the United States is medicine is all about money. If you go to your doctor, your primary care MD is essentially a gatekeeper who

[JerryK]

Aw, come on, Jerry--I'm a working mom of 3. if I can make chili from scratch, so can you!

Brown the meat the night before, mix all the ingredients together (I'll post a recipe if you need one) in the crockpot and put it int the fridge. In the morning, plug in your crockpot, turn it on "high," and dinner will be ready when you come home.

OK, you might be right, but that would imply prior planning on my part..

[Fiddle-Faddle]

Working full time, there's no way I'm going to make bread, let alone gluten-free bread. The best I could do would be perhaps purchase some, if I could find it.

Pick your battles, all right???!!! Making bread IS NOT THAT HARD. gluten-free bread is actually easier to make because you don't have to knead the dough. You can use a breadmaker, or just throw it in the oven.

You can order gluten-free bread online if you can't find it in a store near you. Some of it is acceptable if it is toasted and slathered with butter, or given a tasty sandwich filling, but the homemade stuff is way way way cheaper and so much better, it's ridiculous.

Do you live alone, or do you have family in-residence who can help out with the cooking part of this?

[Fiddle-Faddle]

...would they think I

[Rusla]

Chili prep time from scratch is maybe 15 min and if you have a slow cooker you put it all in and it cooks while you are at work. What I put in chili is this:

Green, red, and yellow peppers.

Onions,

Mushrooms, lots of garlic

Fresh tomato wedges

If I want meat I use chicken or turkey, I put it in the bottom of the cooker with everything else on top.

Kidney beans or black beans, maybe both.

tomato sauce and paste

Chili pepper and a bit of cayanne pepper and whatever else I want and voila, I let it cook.

See how hard that isn't?

[JerryK]

Pick your battles, all right???!!! Making bread IS NOT THAT HARD. gluten-free bread is actually easier to make because you don't have to knead the dough. You can use a breadmaker, or just throw it in the oven.

You can order gluten-free bread online if you can't find it in a store near you. Some of it is acceptable if it is toasted and slathered with butter, or given a tasty sandwich filling, but the homemade stuff is way way way cheaper and so much better, it's ridiculous.

Do you live alone, or do you have family in-residence who can help out with the cooking part of this?

I have a gluten munching wife and 2 daughters who are in no way going to forgo wheat just because

it gives dad the runs. They are certainly happy to make sure the house is stocked with gluten-free free products, but I am on my own to make certain I comply. My wife would choose bread over me I think

PLUS right now we still have a house full of Glutenated food that they are eating off of. As we purchase more and more gluten-free food, I'm sure things will get better.

[Electra]

See, even on this thread we have someone who thinks I should be eating gluten and trying to get

a Celiac panel from my doctor. Then another who thinks I shouldn't say anything to my HMO. Other folks will tell me to go

with my Enterolab results, because Dr. Fine is the man.... Oh the controversy!

Then there is Fiddle Faddle who thinks my family has time to make homemade Chili Nah, it was Chili out of a can and I was disappointed when I read the label. I WANTED to have some, really badly. Knowing that I wasn't supposed to, made it worse.

Working full time, there's no way I'm going to make bread, let alone gluten-free bread. The best I could do would be perhaps purchase some, if I could find it.

Meanwhile my mental health is deteriorating....

I have corresponded with Enterolab and they recommend a trial period of the gluten-free diet to seem if my symptoms improve. To their credit they are very responsive to your questions. I will stick to that commitment as long as my mental health holds out...

I'm right there with you. I not only have Celiac, but I think my 2 yr. old daughter and possibly my 5 yr. old son have it and I have two other boys that I'm testing just to be sure. I also own and run my own day care and I'm finding this to be so overwhelming. I am on a program though the state that requires me to provide certain foods to my day care children in an attempt to encourage healthieer eating and educated providers, If I cut that program out then I lose some of my state paying children (and I can't afford to do that right now). This means I'm stuck serving Glutan foods to other kids on a regular basis while trying to stop my 2 yr. old from eating them. I have 4 kids and my hubby works late so I have to get my kids to all events and sports M-F with no help whatsoever. I also have to find all my own babysitters which is very difficult. Then I have to deal with trying to get sitters to understand what my daughter can and can't eat UG!! I also have 3 people close to me that are dying of cancer and 1 other dying of other ailments.

I'm trying to get better from nerve damadge, work 50+ hours a week, find a back up for my day care so my daughter and I can get to all of our appointments, get my other kids to be tested, learn the ins and outs of a new diet, get all my kids to sports and school events, keep my house clean, get to the health food store on top of the grocery store and do all the errends weekly, I have an 8th grader I have to constantly hound and help with homework, I have to get my kindergardener to do his homework every night, my 10 yr. old has had problems in school that I may have to hire a PI for, and about a kazillion other things so where does that leave me time to cook and go see my gram who is dying of Leukemia?

Unless I have been in your shoes It's hard to know if I'd be able to handle it or not, but I do know that I still wonder if I am going to make it UG. All I know is that the mental stuff for me seems to be getting SOOOOOOOOOOOOO much better and I've only been gluten free for a few weeks.

If I was still on gluten I would not be mentally sound right now. I was starting to lose it fast and was blacking out and my hubby tells me I was so confused a lot that I couldn't even hold a conversation half the time, so half of your mental state may be coming from the Gluten.

Good Luck!!

[Rusla]

Jerry, if you really do have Celiac then there are chances your children may also have it. This is more than just "dad with the runs" it is life or death. If they want you to die because they can't give up wheat then they are selfish. We have rice pastas that replace the wheat things and bread well there are some not bad ones out there and there are gluten-free pizza's so, it won't kill them to change over, but it could kill you not to.

[JerryK]

Jerry, if you really do have Celiac then there are chances your children may also have it. This is more than just "dad with the runs" it is life or death.

I understand, this is a large part of what's frustrating me. I don't even know for sure if I have Celiac, how can I advocate a life-style change for someone else, just because I appear to be Gluten Intolerant?

This is why I struggle daily with my decision to go with Enterolab's recommendation and not pursue

a diagnoses from my HMO. I would like it to be PROVEN, but I understand that proof is not always that easy to obtain.

Maybe for my kids sake I should abandon my gluten-free period, eat it like the dickens and pursue a standard diagnoses.....You tell me

[lonewolf]

Maybe for my kids sake I should abandon my gluten-free period, eat it like the dickens and pursue a standard diagnoses.....You tell me

You could do this and still get a false negative. Or, you could be like me and have non-Celiac gluten intolerance, which I have discovered basically means I have Celiac disease without the correct genes.

What led you to this website in the first place? Wasn't it because you had symptoms, you recongnized them as being symptoms associated with Celiac disease/gluten intolerance and you realized that you were experiencing the same things that many people who are diagnosed with celiac disease/gluten intolerance have? Haven't you had some relief of symptoms since going gluten-free? Doesn't this tell you something?

If you want to have more information, why don't you get gene tested and see what genes you have that you could have passed on to your daughters. There are places besides Enterolab that do gene testing, if you feel you can't trust them.

Are you the one who has a twin brother that has similar symptoms? If so, how's he doing?

[nikki-uk]

I understand, this is a large part of what's frustrating me. I don't even know for sure if I have Celiac, how can I advocate a life-style change for someone else, just because I appear to be Gluten Intolerant?

This is why I struggle daily with my decision to go with Enterolab's recommendation and not pursue

a diagnoses from my HMO. I would like it to be PROVEN, but I understand that proof is not always that easy to obtain.

Maybe for my kids sake I should abandon my gluten-free period, eat it like the dickens and pursue a standard diagnoses.....You tell me

Jerry, I understand that the ramifications to having an official diagnosis of celiac disease in the US is different (I'm in the UK- we have the NHS- free health care ,imperfections 'an all)

If you were in the UK I would advise you to get back on gluten and go the 'medically accepted' route.

You are clearly struggling with whether to commit to a lifelong diet without hard proof - and understandibly so.

All I can say is I know there is no way on earth my hubby would stick to the diet if he didn't have irrefutable proof (which he has through having positive biopsies) - so I do sympathise.

You have to weigh up the options I suppose. If you feel that you can't do it or would struggle to stay gluten-free without formal tests then maybe that's the route to go..and suffer the consequences insurance wise??

Ultimately it's your health - and you have to do what you can live with.

[JerryK]

You have to weigh up the options I suppose. If you feel that you can't do it or would struggle to stay gluten-free without formal tests then maybe that's the route to go..

This is the problem, I will always wonder without proof....Insurance wise, it's a wash. I pay my premiums, so it doesn't matter to me what they think.

A large part of the problem is it's not something you can see. If I grew mushrooms on my forehead, when I ate bread, and they went away when I stopped, I'd KNOW wheat was a problem.

I think I might need to pursue an official diagnoses, just for my own sanity. Just so that I know I'm not punishing myself for no reason. j

[kbabe1968]

JerryK - I SO know where you are coming from.

Do you read this board sometimes and just get scared that all you be left to eat is celery and rice crackers? I sometimes do - how other allergies and food sensitivities arise after eliminating gluten!

I think you and I are in the same boat. You are two days ahead of me with gluten free. I went b/c I had mixed lab results with all my blood and stool cultures, and I just didn' want to shell out the cash for the upper gi test, thought trying the diet was the best way. My "gi guy" was pretty sure it was that or IBS. Even with inconclusive tests. I guess I SHOULD have asked him before going gluten free. But somedays you just have to think for yourself and make decisions with what you know to be true.

I realized the other night that I will never be able to have my favorite pizza....ever again....unless of course, I like diarhea and running to the bathroom in the midst of a meal (yeah, my body never even waited until the meal was over - first bite would cause me to start getting sick. I had debated about never eating again, truly). Let me tell you. I've only had D 3 times in the last nine days. For the FIRST TIME in over 12 years I'd gone a whole day with out D. That is HUGE in my book.

And I had another woman who's been diagnosed with it tell me that she doesn't do the diet b/c it's too restrictive and she'd rather deal with the health issues and "push thru it" than actually feel better....talk about needing a mental health professional!!!! Is that reall ywhere you are? Do you value yourself so little that the mere thought of inconveniencing others that you'll sacrifice your own health?

I do have the luxury (?) of being a SAHM. So I have more "baking time" on my hands and I am in charge of cooking, so they kind of have to eat what I buy (LOL.....no wheat for them either! LOL BWAAAAAAHHHHHH HAAAAA HAAAAA!!!! - note evil laugh!!!). I am relearning the art of baking gluten free with actually quite surprising results...I have not tried bread yet.....I'm scared! I'm waiting on a bread machine someone promised me b/c I like the idea of dumping in the ingredients - pushing a button - walking away - coming back two hours later to a fresh loaf of bread! LOL. Lazy baking is my favorite!

I'm not sure where you are - but is there a way to find a bakery near you that makes gluten free breads? A health food store that carries really mainstream items - I found Brown Rice Tortillas the other day, a little drier but they mean I can still have Mexican food. And I actually like brown rice pasta better than whole wheat pasta - been eating that for years without needing too.

I've been gluten free for 9 days. And I don't feel like killing myself on a daily basis, the pain had gotten to me so much, I really considered that being dead was better. It's sane thoughts like that that keep me going.

Can you focus on the "I can's" instead of the "I can'ts"? I CAN have this, that and the other thing. There are LOTS you CAN have.

That's the only way I'm making it thru is to focus on the "I CANS" and being encouraged by others here.

Can you cook on weekends and freeze for the week??? There's lot that can be precooked and frozen to nuke on nights when there is nnot a dinner option for you (pizza night, chili night)? Make your own frozen meals kind of thing. You said your wife was supportive, will she help you? WAs the Chili something that was bought before or after going gluten free? We're kind of slowly de-glutening for the rest of them because we have glutened stuff in the house.

If you want - check my blog - as I work on recipes that are gluten free and palatable to gluten-eaters, I'll be sure to share them. SO FAR, I have not made one thing that they've complained about. There's definitely more to come.

Hang in there. BELEIVE ME, i know it's hard. I made it thru the first hurdle - telling my parents. But...I know that the first few times I show up with a food for me to eat at their house, they'll make a big deal about it. I AM WORTH IT. Being able to be healthy and alive and not so sick all the time is good for my family. Very good for them.

Hang in there. Please.....

[Fiddle-Faddle]

This is the problem, I will always wonder without proof....Insurance wise, it's a wash. I pay my premiums, so it doesn't matter to me what they think.

You need to talk to Nini on this board--I believe she was denied health insurance, and so have others. Others have also been denied life insurance. Of course, this means that the insurance companies are staffed with idiots, as celiac is the cheapest disease in the world to cure. Free, in fact.

kbabe, I love how you think! I'll even take it a step further. I can have anything. I just have to find or make up a recipe to make it gluten-free. So far, I have not been brave enough to try to make gluten-free puff pastry, but I did find a recipe for it. Everything else, I have made and been delighted with, even pizza.

BTW, corn tortillas are gluten-free, at least, all the brands I have seen are.

[tarnalberry]

So, I'm feeling pretty confused and frustrated. I've identified a potential problem. I've mailed off my poop to some dude in Texas. He's mailed me back and said "You should never eat gluten again".

How do I KNOW this is real. How do I MAKE it real. I mean, on the surface it sounds pretty harsh.

You should never eat bread, the staff of life, again. What a harsh harsh sentence.

It's as harsh as your perspective makes it. Bread is not the staff of life - there are many cultures that never eat it. It seems that way to us because of the culture we grow up in, but we CAN adapt (and perhaps find other things you want).

On the other hand, I don't wish to damage my body or have symptoms, if gluten is indeed what's causing them.

Good for you!

How about friends and family. Do you all know how silly it sounds to most people, when you tell them you can't eat wheat? I cautiously broached the subject of Celiac/Gluten Intolerance with my mother, and she looked at me like I was from another planet.

Ha! Do we know!? Do you read the board? Yes. Some families are like that: "If I don't know about it, it must not exist." Well, that's their option to be closed minded. But you know better, and that is what matters. We all find our own approach for dealing with it, and it often involves educating our family (over months), and accepting that they may or may not ever get on board.

How about my HMO? Do I mention it to them? They already think I'm a sickafantic headcase(but then that is the standard MO, is it not). WTF do I do?

You can mention to your doctor that you feel better eating gluten free, and that you are going to continue doing so, but it's not anything to stress over. It just is what it is.

I've been really good. I've done 10 days....to the very best of my ability. Last night my family ate chili and I couldn't have any of it. CHILI for God's sake! I wanted some. I ended up eating mashed potatos and a piece of beef. I just dunno if I can do this for the rest of my life....

So make chili without wheat. I've never understood why wheat goes in chili, as I've never put wheat in my chili. You don't have to deprive yourself of almost anything, you just have to adapt the things you want.